twin dies of ? heart problem - I want reassurance that I am OK
My identical twin with no heart problem history died at age 60 after undergoing echo, cardiac cath and being given a clean bill of health. His only symptom had been dizziness and tired ( he worked 14 hr. days) He had some abnormal EKG findings and labs that warranted the above investigation. Autopsy Dx. Fibroelastosis, diffuse, endocardium and pericardium.We were told this could only be identified upon autopsy. He had areas of fibrosis, positive for fibrous tissue and elastic fibers, left ventricle, epicardial, pericardial, and endocardial fibrosis; diffuse fibrosis of myocardium with marked hypertrophy; mitral valve, diffuse fibrosis with degeneration and enlargement. My primary was contacted so I could receive a complete cardiac workup. The cardiologist said it was unlikely that this dx. was correct on my twin and suggested that the autopsy slides be sent to another facility for a second opinion. That opinion came back cardiomegaly, question cardiomyopathy with biventricular hypertrophy. Mitral & tricuspid valves show fibrosis, left ventricle with mild increased interstitial fibrosis without definitive evidence of old myocardial infarct. Needless to say we are totally confused as to the cause of his death. I have no chest, jaw, neck, back pain. I am not dizzy or unusually tired. Both my twin and myself have cholesterol of 80 and 90 - almost dangerously low as we have been told, with all other labs in good range. I am just retired but worked at a job where I walked 17 miles a day for 37 years. I am about 20 lbs overweight. I take no medication except Prilosec for acid reflux. I do have chronic sinus congestion that causes me to clear my throat frequently. I am not short of breath nor do I have pain on exerction. After my labs came back normal a digital stress echo was performed. Report states patient achieved his target heart rate with normal LV function. The ECG and echo both were nonischemic. However, ECG showed downsloping ST depression in lead II, III, AVF, which lasted a few minutes into recovery. My cardiologist suggests a cardiac cath now or return checks every 6 months with immediate attention to any symptoms I might have in the future. I hesitate to do any invasive tests since they were done to my brother, were perfectly normal and he died 32 hrs. later. Are there any other tests that should or could be done other than the stress echo that would help in diagnosing me? The echo on my brother showed slight enlargment of the heart - upon autopsy it was found to be grossly enlarged. I therefore have little faith in the echo. Long story short, I don't know what to do next. If my brother did die of fibroelastosis I have been told there is no way to check me for it or nothing but a heart transplant could help if it were present. Any suggestions for follow-up testing would be appreciated. I am presently trying to clear it with my HMO to go to another facility for a second opinion and or tests. Thank you for your time. Anxiously awaiting anything you can suggest.
You really should post your question in the Doctor-to-Patient Heart Forum where Cardiologists from the Cleveland Clinic will see it and reply. Here is a link, or you can simply look at the top left of this page and click on "Heart Disease" under the heading "Ask a Doctor Forums".
I'm sorry about your twin. Your cholesterol can be too low, particularly if the HDL is what is the number bringing down the average. It's possible your twin had an unidentified cardiomyopathy, by the sound of it, and it may be completely unrelated to you. Fibrosis is scarring, basically, and scarring does occur with cardiomyopathy. Having a normal echo sort of rules that out though, and these findings are really confusing. Definitely post this to the doctor.
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